(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Katherine  -  your comments about inhalers is very interesting and something I had never considered about my own "lung hygiene".  I use an inhaler twice a day, not because it does anything in particular, but because my doctor said it was important to use as a preventative.  It is Symbicort.  You mention two others which you say are important because they make you cough up the yellow sputum, versus clear sputum.  The Symbicort does make me cough a bit just after I take it, but it does not make me cough up sputum.  I am now wondering if I should change inhalers and use what you use so that I do cough up the stuff that can make my lungs feel tight.  I will discuss this with my doctor.  I have not heard of Atrovent or Qvar, but I will do some research on them and see how they are different.   It makes me realize that the actual product our doctors tell us to use can vary and that one should be vigilant in understanding options.  I am very glad you brought up these issues of inhalers.  I also have on hand the inhaler Proair, and I was told only to use that when I feel I am not getting enough air - to use it as a "rescue inhaler".  When I could not breathe well in Idaho due to the altitude, I took two puffs and that did provide relief... but I was told only to use it every 4 to 6 hours.   Are there other inhalers out there that serve as rescue inhalers that might be any better?   I just want to know that I have the right product on hand!    Thank you, Pamela  

I have Proair as a rescue inhaler and Breo as a once daily. They have worked very well for me Pamela. Irene

thanks Irene - I will ask about Breo as well.  Pamela   

Katherine, thank you for your encouraging words. I was also prescribed saline nebulizer treatments twice a day. Found it very abrasive twice a day and I don't cough up any sputum. I have what is known as dry bronchiectasis. Most of my phlegm is from my sinuses and I use saline sprays every day. I thought Symbicort was to help open the airways? I do worry about mucus building up in my lungs since it's hard for me to cough up mucus and sputum. It's a journey my new found friend. I love these forums because we get to share our experiences and perhaps get new insights on how to journey on with these illnesses. Do you know if Atrovent or Qvar are milk laced?
Rosie

Hi Pamela , My understanding is that the symbicort is to open the airways. The saline nebulizers help with making you cough up sputum. I find it very irritating so my doctor told me to cut down on the amount. I don't use every day because I feel worse when I use every day. What are you finding are the benefits to using Symbicort? Have you experienced any side effects?

@melrosedecosmo, Rosie, we are ALL learning from each other! I googled 'are Atrovent or Qvar milk based' and didn't come up with a good answer. This would be a good question to ask of your local pharmacist . they are a GREAT resource! I call them all the time! Check it out and share with us! Hugs! Katherine

Will do Katherine. This is how I found out I could not use Breo,checked with the pharmacist. I am lactose intolerant. Sounds like you do your research also! Have a great weekend. Rosie

I have bronchiectasis and have also been diagnosed with atypical cystic fibrosis and now, of course, MAC. My CF doc has me using the nebulizer twice a day. I take a couple puffs of albuterol before my treatments. The saline loosens and thins the mucous so you can get it up easier. The albuterol opens the airways which is why I use that first. Initially, I was given Symbicort for my inhaler but it caused my voice to change (I could barely talk) and I totally felt like I was suffocating. It affected me in many ways, all bad. I was put on a steroid to counteract the affects and changed to the albuterol or Proair. I do much better with those. They are supposed to last 4 hours. The Aerobika is also supposed to loosen the mucous in the lungs. I use that after my saline treatment. Linda

Pam, I now use an Ionic Personal Air Purifier called the Minimate when I fly. I found a link for it on this site and ordered it off Amazon. I think it was around $50. I wore it last week when I flew to LA. It doesn't make a sound and seemed to work well. You wear it like a necklace or clip it to your clothes. I will use it in other areas where there are crowds as well. I also used Halo. That was a tip from Katherine, I believe. And always take Airborne. That works really well for me. Linda

I listened to a webinar by a MAC doctor - link found somewhere in these pages - and in the webinar the doctor indicated that anyone with MAC should never use a humidifier. Not sure that it would hurt with oil, but I would never use one with any kind of water. Linda